Hi My dad has just been diagnosed with OC T3 N1 M0 and is being referred to St Thomas's Hospital in London.
I would be most grateful for any advice/comments on both this staging diagnosis and also from anyone who has been treated or is undergoing treatment at this hospital.
kind regards
Fiona
Hi Fiona
I was treated and underwent surgery for OC in St Thomas's with the wonderful James Gossage and his team (Andrew Davies). My treatment was first class with absolutely no issues at all from my side. I had a Transchiatal Oesophagectomey in September 2014 having undergone chemo (ECX) to shrink the tumour and then again after surgery, which is quiet common.
I spent a total of ten days in St Thomas's where, having never spent time in hospital before, I was treated with dignity and respect way beyond what I had thought possible. I cannot speak highly enough of the team their.
Please feel free to ask any questions.
Good luck.
Bruce
Hi Bruce
Thank you for your response.
My dad has COPD and i am concerned that because of this he won't pass the lung test. Can you tell me anything about the tests they perform?
Kind regards
Fiona
Fiona
I cannot honestly recall all of the tests I had, sorry. I was described, at the time as "otherwise fit & healthy" just cancer.
It is "massive" surgery and they will want to ensure he is capable of surviving it. All I can suggest is that you try and write down your questions, ahead of your first consultant meeting.
They are very thorough at these meetings and that can make it easy, in the moment, to forget to ask. There are no silly questions. Being frightened is expected.
I wish you luck and want to reassure you that you are with fantastic people who want to help.
Bruce
Hi Fiona, guessing the type of cancer cell your Dad has is Adenocarcinoma? (as about 70% are diagnosed with).
Just in case it WAS Squamous Cell Carcinoma (SCC) instead? (which the other 30% have), he might have the relatively "easier" option instead - of radical Chemo-Radio treatment? I was staged the same as your Dad at age 54 (T3/4A, N1, M0) but with SCC. As this type can be treated with radiation, it means no serious Op., no potential complications - and, obviously, much shorter recovery.
Bruce gives a good account of how St. Thomas's perform! My local GUT support group have a good few "survivors" 10-15 years on, enjoying life to the full.
I wish your Dad well!
Hi Aurora
The hospital have said that they cannot say if it is Adenocarcinoma or Squamos Cell. They have saidf it is not typical (i'm not too sure what to make of that).
They are treating it as Intromucosal Carcinoma. Again i don't know what that means and am hoping that St Thomas's can tell us more when we go there.
Kind regards
Fiona
Hi Fiona
To the best of my knowledge an intramucosal carcinoma is an adenocarcinoma type of cancer.
Staging T3: The tumor is in the outer layer of the esophagus called the adventitia. Cancer cells have spread through the entire muscle wall of the oesophagus into surrounding tissue. It has nothing to do with size of the tumour at all and the oesophagus is made up of several layers and represents the no. of layers it has penetrated. N is the number of lymph nodes involved and M is how many organs it has spread to.
The American Cancer society cancer.org has the most informative downloadable pdf's regarding this cancer - however they spell it esophagus and give the most thorough information from how it is diagnosed to tests to questions you should ask your doctor.
I read these and find them invaluable in understanding my cancer which was also T3N1M0.
Good luck with your dad - I believe he is in great hands at St Thomas's.
Hi Fiona,
I had a T1N0M0 which turned out post-op to be a T3N0M0. Diagnosis December 2014. Surgery with George Hanna at Harley Street Clinic in January 2015.
9 days intensive care. 7 days normal wards.
Like Bruce, my first ever stay in Hospital. It was/is a daunting experience. But, as positive as possible. I continue to be awed by my surgeon George Hanna, oncologist Danielle Power and aneatheastist Mike Platt.
Happy to discuss if required.
There is an explanation about the staging analysis from cancer research UK here:
cancerresearchuk.org/about-...
You will be in very good hands at St Thomas'
Our local hospital have said that they cannot say if it is Adenocarcinoma or Squamos Cell.
The tumour is in the lower part of the oesophogus just above the junction. I thought cancer in this area was Adenocarcinoma. The hospital are saying that my dad's cancer is not "typical". Not too sure what to make of that.
They said that they are treating it as Intromucosal Carcinoma. Again i don't know what that means and am hoping that St Thomas's can tell us more when we see them.
Hi Fiona,
Alan's link will explain the intermucosal stage.
Guessing your Dad must already have had some tests or scans to have been staged?
Again, every hospital may differ with tests, etc. Endoscopy is usually the first (I was told SCC just based on 1st Endoscopy). They may carry out an EUS (Endoscopic UltraSound, where you'd be sedated), a CT scan, a PET/CT scan - plus some of the routine tests such as bloods, Lung function, Chest Xray, ECG, EchoCardiogram (an ultrasound scan of heart). Possibly a laparoscopy if deemed necessary? See if they've been able to "grade" the tumour too?? (how aggressive it is).
I think "typical" would suggest Adenocarcinoma, but apologies, I've no medical training.
Your CNS's (Clinical Nurse Specialists) may not yet have given you any relevant reading material - does St. Thomas's have a Health Information Centre or similar? Or, 'phone MacMillan for pertinent books. Tel. 0808 808 0000.
Again, Haward on here would suggest you could contact the OPA at any point for advice. (Oesophageal Patients Association; HO based in Solihull, West Mids. - Tel. 0121 704 9860).
Good Luck to your Dad going forward! The medics are brillliant and will do the best for him, based on his health factors/diagnosis.
P.S. Surprisingly, my SCC was in lower third and, although SCC is ususally down to lifestyle - smoking/drinking, I've never smoked and only have a very occasional drink. I did endure passive smoking from my parents for 35 yrs. but they can't confirm that as cause (
Hi Fiona .What a shock for you all .Welcome here ( though I'm sorry there's a need to be here ) .We'll all try and help anyway we can .
As far as the staging is concerned I think the T stands for tumour and the numbers go from 0 to 4 ,the larger the tumour the higher the number , The N stands for lymph nodes and 1 indicates that they think only one is enlarged and affected by the cancer .( apparently the lymph nodes are a sort of safety net to catch and detain cancer to stop it spreading ) .
The M stands for metastes ( sp ? ) ie whether the cancer has spread to other parts of the body .
Excelent ,excellent news that your dad is M0 and no spread .
I@m female and op in Aug 2013 when I was 64. I. had T2/3 N1 M0 ,after surgery when they can be more accurate it was T3 N0 M0 .My tumour was 6cm and they were unable to get the special endescope with the ultrasound end down because of size .And the chemo while stopping the tumour growing didn't shrink it .
I only tell you this to prepare you as I was very shocked at the time .I had the op and was and am very well .
I had op at St Thomas ,Andrew Davies did mine .I had very very good care in hospital . I did find the specialist nurse a bit lacking .Fantastic ,lovely dietician .
St Thomas's do a trans hiatial op which means that no ribs are broken and no ling deflated as in some other approaches .Maybe this will be good for your dad ? I certainly don't remenber any lung tests .Also before the op I was googling and always reading about hoe important pre op breathing exercises were ,but these were never mentioned so I think they relate to the more invasive Ivor Lewis op . I was on oxygen a lot ( face mask and then the little tubes in the nostrils ) in hospital so perhaps that will counteract the COPD ?
Anyway I've written too much .But absolutely anything you want to know - no question too small or "silly" please ask . You can have my nos if you want . Are you travelling far to St Thomas's ,happy to help with directions /escort duty ,anything .
I felt very alone when dx and was desperate to meet someone who had been through it all.
.Keep strong .St Thomas's are AMAZING .They even specialise in this type of op that has gone wrong or has had complications and are referred from other hospitals .
Hi violet
Thank you for responding. I didn't realise another form of op was available. What is the op called? Hopefully this will be an option for my dad.
We live in Dartford so not too far from St Thomas's probably about 30 mins on the train.
I hope that you are well now.
Kind regards
Fiona x
Hi Fiona - thank you ,yes I am well .You'd be surprised ! Don't forget when looking on line that it tends to be people who have had problems who post ,those who are well don't post much .
I'm no medical expert and I can't answer your question re types of surgery with much authority .
AFAIK there is the Ivor Lewis which seems to involve access via the rib cage ,hence through a rib/s and deflation of a lung and results in a "shark bite scar "
And the transhiatal one - I have a scar in my neck and an inverted V shaped scar below my rib cage ( "roof top scar ) .I think there may be variations within the trans hiatal op .
And there is also a laproscopic op which I guess must be minimally invasive .
There are some really well informed people on here and hopefully they'll post soon .
I would ask to speak to the surgeon and ask about the different operations .I'm sure that they will know the best approach for your dad .
Hi Fiona,
I was diagnosed in March 2012 with oesophageal cancer in lower part. After many checks it was CT3 N2 (gastrohepatic LN) M0. Chemo June until August 2012 with "excellent response " reducing the size from 6cm. Surgery in October. Ivor Lewis. Unfortunately had a leak so was not discharged until after 28 days. Sustained by fluid via PICC line? Chemo again December but discontinued in February 2013 due to developing rash as result of trial drug? Cannot fault the attention given by all at St James's in Leeds. Unbelievable care! It takes a long time after surgery to understand the effects of what you can eat and what causes you problems. After 4 years I am still learning but only eat 3 times a day as opposed to every couple of hours as recommended. Couldn't do that! Still problems with excess acid. Usually up around 4.00am for more Gaviscon. Can't pretend that it's not been a struggle but hey, what was the alternative. Good luck. Persevere and put your trust in those in the NHS looking after you and you will be fine. Sorry for the lengthy note. Once I start!!!
Hi Fiona,
My husband, Alan, had similar staging to you. He had his operation last July and has been told that all is going well. I'm having great difficulty coping with my fear of it coming back. I feel I'm letting Alan down by (in his words) seeming distant.
I know that worrying doesn't help but that's easier said than done. Do you do anything to help you stay positive?
Hi Fiona
Regarding the lung function test I don't know which equipment Tommie's have, but here is a reliable link where you will find descriptions of the various types of tests and their purpose -
webmd.com/lung/lung-functio...
If your Dad has had a diagnosis of COPD then he may already have participated in a similar test. Do bear in mind that all the preliminary assessments are designed to ensure that his operation will be carried out in the most safe and efficacious manner to suit him as an individual.
In my day things were a bit more hit and miss..........my oncologist rejected the opinion of the pathologist, who pronounced that my carcinoma was neither Ad nor Sq but NE (neuro endocrine) (very classy) and for all I know they are still arguing about it; but, suffice to say yesterday was my twenty sixth anniversary...............yeah!
Hi Fiona,
My mum had the same diagnosis almost a year ago. I know how difficult it is. Mum had her oesophagus and a third of her stomach removed. She spent a week in the intensive care unit, then about 10 days recovering on the ward. It all went well, and she had no major complications. The operation lasted 9 hours. Her surgeon was amazing!
Following that she had chemo and radiotherapy. She was lucky as she didn't have major side-effects.
It was the hardest time of our lives. But she is recovering. A major problem is weight loss. Mum has lost about 40kg. It took about 10 months (from diagnosis) for her to get her energy back.
Now she got a clear pet scan. And we are thrilled.
Chin up. It's so tough, but medicine is amazing nowadays.
Sasha
Hello. I am not sure if I can be of help but my husband had the ivor lewis surgery on Thursday. The week before he had a cpex test to assess his fitness for the operation. It involved him being monitored whilst cycling a stationary bike. I understand other hospitals also use a treadmill. His results came back as average. Most patients his Surgeon operates on are below average, but still operable.
The operation took 8 hours. He was highly dependent on the ventilator until a 'clog' shifted. He moved onto a mask on Saturday and a nasal tube today, Sunday.
I wasn't prepared for the shock of seeing him post op.
NOTE TO ADMINISTRATOR. I am unsure if I should be writing the next paragraph - it is meant with the best intentions, but is graphic.
Brace yourself. He was heavily sedated and smelt of congealed blood. He would stir (especially when he heard my voice), gag, look like he was in pain, make a move for his tubes (I had to hold his hands down) and roll his eyes back. The patches on his cheeks holding the ventilator did not help as they pulled his lower eyelids down so it looked like his eyes were bulging. I tell you this only to prepare you and reassure you this phase does past. I had heard about other patients being awake and chatting and felt quite alarmed by what I saw. But as I said, it passed.
I spent many hours sitting by his bed whilst he slept. I now think this was a mistake as it just exhausted me for later and my dear husband has no recollection of me being there even though at times he seemed to be staring at me whilst gagging. I should have saved my visits for when he was lucid.
Things were much better once he was off the ventilator. There was a scare with a shadow on a lung xray, which was only later explained as not being unusual post op.
He had very vivid hallucinations from the morphine and also decided he should get the nurses to call me at 6:45am on Sunday to ask where I was (he thought I had left him alone all day and that it was Sunday evening). I had agree with the hospital for them to call me if things got bad so my stress levels went through the roof. So his Meds were changed and we are hoping the hallucinations stop.
He is now able to sit in a chair and has taken his first sip of water.
I would recommend taking in some wet wipes, a water sprayer and a hand held fan - my husband complained of being excessively hot, and of course something to keep him entertained as it is a long day.
I would also suggest you plan how you are going to take care of yourself. I didn't. I thought I would just manage and I am exhausted because of it.
I hope that is helpful. I don't wish to scare you but I wish I knew how grim it could be initially. I would have found it far easier to deal with. Others do have very different experiences though and hopefully yours will be more pleasant.
Wishing you strength and hope.
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